COMPLEX REGIONAL PAIN ASSOCIATION HOSTS
2ND ANNUAL LONG ISLAND AWARENESS WALK
Reflex Sympathetic Dystrophy Community
Unites for Fundraising Event for Rare Neurologic Disorder
EAST MEADOW, NY, July 2017 – The second annual Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) Walk will take place on September 9, 2017 from 8 a.m. to 2 p.m. The event’s goal is to raise awareness, fund better treatments, and to find a cure for the disabling and painful neuro-inflammatory disorder named for this organization. It will take place at Eisenhower Park’s designated 2K and 5K paths.
This year’s walk will follow the success of last year’s event, which attracted more than 250 walkers and 40 volunteers, and which raised nearly $30,000 for RSDSA. Presently, an estimated 1,000 Long Islanders are diagnosed with this under-reported and under-diagnosed disease. Despite studies that show an estimated 50,000 people join the CRPS population annually, CRPS/RSD is classified as a “rare disease” by the FDA.*
Walk registration is open at-walk-2017. The cost is $25 for adults (ages 12+); $10 for children ages 6-11, and free for children under 5; $15 for virtual walkers. Sponsorships and prizes for raffles are also welcome.
“Our second annual walk on Long Island promises to be one of the most significant fundraisers for RSDSA in the metro-NY region, re-capturing the community’s enthusiasm and hope to improve resources for patients suffering with CRPS,” says Jim Broatch, RSDSA’s executive vice president and director. “The generosity, time, and dedication of our volunteers, many of whom have CRPS themselves, makes this event possible. We could not be more grateful for their contributions and the participation of registered walkers throughout Long Island, metro New York, Connecticut, and beyond as patients form teams, join together in solidarity, and even register as virtual walkers.”
CRPS/RSD occurs when the nervous and immune systems malfunction in response to tissue damage from a trauma (such as nerve or musculoskeletal injury, surgery, or immobilization). CRPS/RSD causes nerves to misfire and generate constant pain, discoloration, temperature changes, and other disabling symptoms.
On the McGill Pain Scale, CRPS / RSD ranks 42 out of 50, making it one of the most severe pain conditions of all, even rated more painful than childbirth, amputation and the pain associated with cancer. There is presently no cure and very limited treatments to manage for CRPS/RSD, which often migrates from one extremity to other parts of the body.
Finding a diagnosis for CRPS pain and symptoms often takes patients several months and often years, and an average of five doctor visits. CRPS/RSD does not discriminate – it affects both adults and children of all ages. Treatment requires coordinated and interdisciplinary patient-centered care to achieve pain reduction/cessation and better function.
Once again, this year’s event participants may choose to walk, run, roll, or whatever method works best for them, to participate. Educational resources, sponsors, and health professionals will be on hand, along with activities for children, followed by a barbeque lunch to encourage socializing with other CRPS patients, care givers and medical professionals.
For more information about the September 9, 2017, Awareness Walk, visit: http://rsds.org/event/2nd-annual-long-island-crpsrsd-awareness-walk/
Formed in 1984, Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) is an international 501 (c) (3) not-for-profit organization based in Milford, CT. Its mission is to provide support, education and hope to all affected by the pain and disability of CRPS / RSD, while driving research to better develop treatments and a cure. RSDSA, which has sponsored similar walks in seven cities across the US this year, aims to improve the lives of those affected by Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy. For more information about RSDSA, visit http://rsds.org or call 877-662-7737.
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*Based on the less than 200,000 people across the United States with the diagnosis.